TAG ARCHIVES FOR data security

On October 10, the National Institutes of Health (NIH) published a Request for Information (RFI) from the public on Proposed Provisions for a Draft Data Management and Sharing Policy for NIH Funded or Supported Research. According to the NIH, it will take into account the feedback received as it develops a draft of a new NIH policy for data management and sharing. That draft will also be open for public comment, at a future date. Comments on this first stage of policymaking, the proposed provisions, are due December 10, 2018. Read more

On May 10, PRIM&R hosted a webinar, Forward-Looking Strategies for IRBs in the Genomic Age: Preparing for Shifting Concepts of Identifiability, to provide expert input on the impact of breakthroughs in genomics research on traditional notions of identifiability.The panel consisted of Jiayan Chen, JD, a partner at McDermott Will & Emery, LLP, and Suzanne Rivera, PhD, MSW, vice president for research and technology management at Case Western Reserve University. After the webinar, Ms. Chen and Dr. Rivera responded to some of the attendee questions time didn’t permit us to address live. We’re pleased to share those responses with the readers of Ampersand. Read more

On April 30, 2018, the EPA published in the Federal Register a proposed rule titled, Strengthening Transparency in Regulatory Science. The rule would prohibit the EPA from basing regulatory action on scientific studies for which the underlying raw data and models are not publicly available “in a manner sufficient for validation and analysis.” According to the notice, the proposed rule is “designed to increase transparency in the preparation, identification, and use of science in policymaking.” On its face, this sounds good; however, many in the scientific community are expressing deep concern that this proposed rule is actually a way for EPA to limit the types of science it can and will use in regulatory decision-making, to the detriment of environmental policy and the public’s health. Comments on the proposed rule are due May 30. Read more

MISST is an acronym the Connected and Open Research Ethics (CORE) initiative research team uses to describe research that involves the use of mobile, imaging, pervasive-sensing, social media, and location-tracking strategies that can passively observe human behavior. The CORE is a growing community where conversations about research ethics and technology are beginning. We seek to increase awareness of this resource and we invite IRBs and research stakeholders to get involved—specifically, we want to hear from the PRIM&R community! We invite you to join the conversation by signing up for the CORE Network and sharing your questions about how to do this research and/or your expertise and lessons learned. You can also follow CORE on Twitter and LinkedIn. Together we can learn from one another and begin to have an informed discussion developing an ethical framework for MISST. Read more

On February 26, 2015, PRIM&R hosted a webinar titled Data Security Incidents: the Role of the IRB and Information Security. This topic was submitted by Teresa Doksum, PhD, MPH, and Sean Owen, CISP, CAP, CRISC, through the 2014 Call for Webinar Proposals. The potential for data security incidents in research with human subjects requires institutional review boards (IRBs) to work closely with information security experts to prevent these [...] Read more

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Public Responsibility in Medicine and Research (PRIM&R) advances the highest ethical standards in the conduct of biomedical, behavioral, and social science research. We accomplish this mission through education, membership services, professional certification, public policy initiatives, and community building.